Playing Phone Games and Nintendo Switch & Home Exercise Routines and Robotic Assistance Devices
Forums Director Kevin Schaefer talks about how the pop-culture icon Kevin Smith impacted his life, both as a writer and as a person with a disability. Also, there have been some recent discussions on the forums about keeping busy by playing phone games and using a Nintendo Switch. Creating at home exercise routines and using robotic assistance devices have also been topics of conversation. Are you interested in learning more about spinal muscular atrophy? If so, please visit smanewstoday.com/
22 Apr 20206min
#56 - SMA Treatments Overview and “Crip Camp” Discussion
In episode 56, hosts Kevin Schaefer and Michael Morale provide an overview of the different SMA treatments, and discuss recent news about the experimental therapy risdiplam. Then in part two, special guest Ralph Yaniz joins Kevin and Michael to discuss the new Netflix documentary “Crip Camp.” Ralph is a columnist for Muscular Dystrophy News Today, and a disability rights activist. Listen to their thoughts on this film, which explores the early days of the disability rights movement. To learn more about spinal muscular atrophy, visit www.smanewstoday.com.
21 Apr 202050min
How Adult Patients with SMA Benefit From Spinraza Treatments
To increase her independence, forums moderator DeAnn Runge is debating if she should pursue a service dog, a JACO Robotic Arm or both. Each option presents with pros and cons. SMA News Today’s multimedia associate, Price Wooldridge, discusses how adult patients with Spinal Muscular Atrophy benefit from Spinraza treatments. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
20 Apr 20209min
Ideas for Staying Fit and Healthy During Isolation & Approval of Zolgensma for Treating SMA in Japan
Forums Director Kevin Schaefer talks about ideas for staying fit and healthy during COVID-19 isolation. SMA News Today’s multimedia associate, Price Wooldridge, discusses the approval of Zolgensma for treatment of Spinal Muscular Atrophy in Japan. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
17 Apr 20205min
Accessible Toys, Having Fun With Subscription Boxes & Kevin Schaefer's Obsession With Action Figures
The Easter holiday looked a lot different this year than it traditionally does. Forum members shared their plans for the holiday to make it special. Accessible toys was another topic of conversation. Also don’t forget to check out DeAnn’s latest vlog on having fun with subscription boxes. Forums Director Kevin Schaefer talks about how his lifelong obsession with action figures contributes to his identity as a storyteller. Are you interested in learning more about spinal muscular atrophy? If so, please visit smanewstoday.com/
15 Apr 20206min
Odd Jobs, Spring Cleaning & French Study Finds Improvements in Palliative Care for SMA Type 1 Babies
Forums moderator DeAnn Runge is looking for solutions to help with odd jobs and spring cleaning. SMA News Today’s multimedia associate, Price Wooldridge, discusses a French study which finds palliative care for SMA Type 1 babies has improved. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
13 Apr 20206min
FDA Shifts Risdiplam Decision to August to Include Data on Older Patients
Forums Director Kevin Schaefer talks about the Stephen Hawking biopic “The Theory of Everything,” and how this film explores disability. SMA News Today’s multimedia associate, Price Wooldridge, discusses the FDA shifting it’s Risdiplam decision to August to include data on older patients. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
10 Apr 20209min
Managing Spinraza Treatments, Caregivers, Outside Deliveries and More During COVID-19
COVID-19 is still a popular topic of discussion on the forums. Topics associated include continuing with Spinraza treatments, scheduling caregivers, how to handle outside deliveries and more. Also, forums Director Kevin Schaefer reviews the new Netflix documentary “Crip Camp,” which tells the story of the early disability rights movement. Are you interested in learning more about spinal muscular atrophy? If so, please visit smanewstoday.com/
8 Apr 20205min
